MANDT Training Brings Together Families
On December 10, Fragile X Resource Center of Missouri hosted a MANDT training session for local families.
So Much Happened in 2016 Thanks to You!
As we begin the new year, we want to take a moment to thank you for your incredible support in 2016! Because of you, we continued our mission to help all families living with Fragile X. Last year, we accomplished more than we could ever list in a single article so we want to share just a few highlights that happened around the nation because of you!
MO: Fragile X Walk
Mark your calendars and plan to join Fragile X Resource Center of Missouri for their annual Walk for Knowledge!
University of Alberta: Memory Study in Children/Youth
Researchers at the University of Alberta's Department of Pediatrics and Stollery Hospital are completing a study looking at memory in children with a neurodevelopmental disorder or typical development.
Message from NFXF President: It’s an Honor
Dear Fragile X Community, Sharing my family’s Fragile X story with you through the NFXF Annual Appeal was truly an honor. If you haven’t already, I hope you’ll take a moment to read through it and [...]
Summer Student Fellowship: 2016 Summaries
The NFXF Summer Student Fellowship was established to encourage a new generation of Fragile X researchers. By funding young scientists’ research pursuits, we believe that it will continue to push Fragile X into exciting new territory and inspire them to continue important work in this field.
Merchandise Being Sold with Offensive “R-Word” Language
We are incredibly proud of the swift action taken by members of our community, after discovering offensive items for sale on a few major retailers' websites. We stand with you.
21st Century Cures Act Demonstrates Bi-Partisan Spirit
Closely following its passage (392-26 on Nov. 30) in the House of Representatives, the U.S. Senate took up the 21st Century Cures Act and enacted the law by an equally impressive margin (94-5) vote. The law’s next stop is President Obama’s desk, and the President has already made clear his support for the bill and his intent to sign it. Passage will mean nearly $5 billion of new funding for the National Institutes of Health (NIH) and $500 million for the Food and Drug Administration (FDA), along with a plethora of policy provisions that will bolster medical research.
We Rock The Spectrum Family Day
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Double Your Giving. Increase Your Impact.
[mpc_image preset="preset_2" image="25446" margin_divider="true" margin_css="margin-bottom:15px;" image_size="700_thumb" image_opacity="100" effect="none" image_hover_opacity="100" mpc_ribbon__disable="true" animation_in_type="transition.expandIn" animation_in_offset="100" animation_in_duration="1200" animation_in_delay="600"]Our annual year-end appeal is underway, and we’re grateful for the generous support during our most important campaign of the year! Your [...]
Fragile X and Hyperarousal Educational Conference
On Saturday, October 29th, Fragile X of Central Arkansas hosted renowned speakers and therapists, Tracy Stackhouse and Sarah "Mouse" Scharfenaker for an educational conference, open to all families.
Annual Appeal
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11th Annual Mouse Races with Fragile X Resource Center of Missouri
Flags were flying and the crowds were jumping as (contained) mice ran their races at the 11th Annual Mouse Races to Support the Fragile X Resource Center of Missouri.
Language Challenges and Language Possibilities for Fragile X Syndrome
Language is critical in much of daily life. Making friends, learning in school and holding down a job, all require language. For people with more limited language, like so many with Fragile X syndrome (FXS), researchers and clinicians are trying to figure out ways of improving language so that inclusion in more of life’s activities will be possible.
Western Mass Fragile X Wine Tasting Fundraiser
On October 2nd, Western Massachusetts Fragile X partnered with Four Season's and Esselon Cafe to hose a wine tasting event, benefitting Fragile X.